The views and experiences of families and direct care support workers regarding the expression of sexuality by adults with intellectual disabilities: A narrative review of the international research evidence.
Families and staff share the same fear-shaped silence around sex; break it with a one-page script and practice.
01Research in Context
What this study did
Michael and team read 11 studies from seven countries. They asked two questions: What do families think about sex and relationships for adults with intellectual disability? What do paid support workers think?
All studies used interviews or focus groups. No one tested an intervention. The goal was to map the fears, hopes, and gaps in knowledge.
What they found
Parents worry about abuse and pregnancy. Staff worry about blame from bosses. Both groups feel they were never taught what to say or do.
The review shows a loop: fear leads to silence, silence keeps fear alive. Everyone wants rules, but few agencies give clear ones.
How this fits with other research
Udhnani et al. (2025) asked obstetric clinicians the same question in pregnancy care. They found the same mix of support and fear, showing the problem crosses medical and disability settings.
Wilkinson et al. (2012) heard family doctors say, "We need real practice, not lectures." Michael’s review echoes the call, but moves the topic from general health to sex education.
Yang et al. (2018) looked at grandparents’ roles. Together these papers sketch a full family circle: grandparents, parents, and paid staff all lack guidance, so the adult with ID gets conflicting messages.
Why it matters
If you write behavior plans or train staff, add a sexuality module. Start with one page: list the agency’s rules, the right words to use, and who to call when questions come up. Give staff that page on day one. Rehearse role-plays in team meetings. When staff feel safe, they stop shutting conversations down, and the people you serve gain the dignity of informed choice.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Draft a 5-rule quick sheet on consent, privacy, and who to call; rehearse it at the next staff huddle.
02At a glance
03Original abstract
BACKGROUND: There is a growing and evolving research evidence base regarding sexuality issues and adults with intellectual disabilities. However, the experiences and views of families and direct care support workers and their support and development needs in the topic area are unclear. AIMS: The aim of this narrative review was to explore the views and experiences of families and direct care support workers in relation to the expression of sexuality by adults with intellectual disabilities and to identify their distinct support and development needs. METHODS AND PROCEDURES: A comprehensive search of relevant databases from May 1998 to June 2018 was undertaken. Included studies had to address specific criteria: peer reviewed papers, the use of appropriate research methods, and focus exclusively on the individual views and opinions of families and direct care support workers. The search of relevant databases yielded 313 hits. Following the application of explicit inclusion and exclusion criteria, 11 papers were deemed suitable for the review. The PRISMA checklist was utlised in the process. Quality was assessed using a recognized framework. OUTCOMES AND RESULTS: The data were analysed and key findings highlighted issues for families and direct care support workers including: attitudes and beliefs; fear of abuse, exploitation and harm; new technologies; supporting developments in practice; and education and training programmes. CONCLUSIONS AND IMPLICATIONS: Families and direct care support workers have specific support and education needs. Future healthcare initiatives need to be developed that are fully responsive to the identified concerns and requirements of families and direct care support workers.
Research in developmental disabilities, 2019 · doi:10.1016/j.ridd.2019.04.012